March 15th, 2010 | 
Author: Following several emails asking why I have stopped the evaluation process I just want to say it didn’t stop, I just stopped posting about it back in October as it was important to keep the confidentiality of recipient and donor. I will post again after several months have passed when I will describe the rest of the evaluation and the donation – in the meantime please scroll down to the bottom of the home page of this blog to read the evaluation process from the start.
EDIT: I took up posting again and you will find the full account. Links on the left or go to home page and scroll to the bottom to read from the start.
There are also plenty of good (I hope) links and pages on this blog to offer information regarding kidney donation.
If anyone is considering becoming a living donor and would like any information from a donors perspective then please get in contact with me via the contact page or just post a comment and I will get back to you.
Anyone wanting to donate, either non-directed or to a known person and would like some support from someone who has donated then please contact me via the contact form.
Tags: 71 Responses to “My evaluation to become an altruistic kidney donor”
Leave a Reply
Have you actually donated yet? I was thinking of donating to my sister but was not a match so thought I would donate to a stranger, like yourself. Would you recomend I do that?
I think you are really great and a fanstic inspiration. Do you have anyone who has inspired you and made you want to do this.
With my warmest regards
God Bless you
Marjie
Hi Marjie,
Thanks for contacting. I am unable to say whether I have donated yet or not. It is important that recipient privacy is protected and as there are not many of these type of donations I really cannot give too much information away. I will be posting at some stage in the near future to fill in the gaps regarding the evaluation and actual kidney donation, in the meantime I just post about subjects I find interesting.
I am sorry you were not a match for your sister, I hope she finds one soon. Would I recommend you donating to a stranger? I can’t really give any recommendation as it is a very personal thing and you need to look deep inside you as to how much you want to do this. Your heart will tell you whether you are ready for this or not. If you are asking from the point of view of going through all the tests etc, then none of them are painful or anything like that, but you do need a lot of patience as the process can take a long time.
Who has inspired me … well I read a story about a guy called Zell Kravinsky who not only donated millions to good causes but also donated his kidney to a stranger. Reading his story truly did inspire me. I posted recently about a Dr. Susan Hou – although I only heard about her recently, she is one amazing person! There have been a few people over the years who have inspired me one way or another.
I wish you and your sister well.
Di
Hi,
I am about to start the assessment process for non directed altruistic kidney donation! I have to see the surgeon first instead of last due to previous post-surgery complications, but if I get through, I will keep going until they decide they don’t want me (or hopefully do!). I hope the surgery went/goes well for you and your recipient. All the best.
Hi Jen,
I saw the surgeon on my first appointment also, but I had not had surgery before, I think it is nice to meet him/her at the beginning anyway, after all it may be your kidney, but he/she will be removing it! Do let me know how it all progresses, keep us informed as you go along. If you want to chat or anything explained etc then do post or use the Contact page to email me. I will be posting back on my blog in the future about my donation. As you can appreciate confidentiality is so important have to keep a distance between the donation itself and when I post.
Look forward to hearing about your updates.
Di
Hi,
I’m currently about 3/4 of the way through the dontation process to donate a kidney to my dad. So far so good!!! I stumbled across this web page by accidemt and would just like to say it’s a great source of information and nice to hear from others who are going through the same thing. I think donating to a stranger is simply an incredible thing to do. You’re giving the gift of life to someone you’ve never met. You really are the most selfless person ever. Best wishes.
Debbie, all the best with your Dad. The author of this site Diane, has been really helpful to me, as I am in the very early stages of being assessed for non directed altruistic kidney donation. It is just to be able to help someone like your Dad, that we are trying to do this. We may not have met the person who will hopefully receive our kidney, but I can only imagine that someone, somewhere will be chuffed that some strangers do offer their kidney for no other reason than it is something they feel compelled to do. (As I have felt very strongly in the last few weeks, which is why I am now starting the assessment process in the hope that someone out there will eventually receive a kidney from me).
Hi guys,
Well had another meeting with another kidney doctor today. Found out the results from my 5 hour kidney function test were fine. So next step is an MRI scan followed by a psychiatric assessment then i’m all done!!! Possibly looking at September for the operation all going well.
I really think you guys are so incredible. I mean you’re saving a complete stranger, that takes a special kind of person. Living with my dad who’s had kidney failure for 5 years and been on dialysis for 3 years, it’s so inspirational to know that people are willing to donate for no other reason than just human kind ness. I don’t know if any of you are close to someone living with such a horrible disease but what you are doing is putting an end to misery and giving someone their life back. I honestly can’t get my head around how amazing some people can be!!!
When people say to me “oh you’re so brave” or “that’s such a noble thing to do” i just shrug it off. It’s you guys, the ones doing it for a complete stranger that are utterly brave and noble. All i tell people is i’d rather have my dad than 2 kidneys.
I’ll keep you all posted on how things are going.
Take care.
Hi Debbie,
Wow you are so nearly there …. you must both be so excited now that things are gathering pace. Though September seems a long way off, I hope the time does not drag too much.
To me You are the brave one. It is hard to put into words but not having the emotional tie to someone I think brings less stress with it. If I were donating to my father, I think I would be so worried and stressed out the whole time wondering whether I would pass all the evaluation tests as there was a “face” I could see depending on me. As it is I don’t the other person, and they didn’t even know I existed until it was a done deal, if you know what I mean. Umm, not sure I have phrased that well. But to me it is You that is the brave one and your dad and everyone else on dialysis that has to suffer for years. If you click on the link to “blogs” at the top of the page there is one for Judy. A wonderful, lovely lady who lives in the USA who I became good friends with during the course of my evaluation. Unfortunately her husband was too ill at the time for a transplant and subsequently died very recently. I didn’t know anyone with kidney problems prior to doing this and it has opened my eyes to the number of people out there just waiting for “the call” to say there is a kidney for them and the sadness it brings when I hear some never had a chance to get their life back. More people need to know that it is possible to donate to a relative, friend and a stranger. I am sure many more would do it if they were made aware. And of course, to just sign the organ donor register anyway.
Please do keep us informed of your progress, I am just so excited for you both. Thank you so much for letting us know how things are progressing.
All the best
With love and blessings
Di
Hey.
Have been wanting to do this since I was 18. Managed to get as far as contacting the Organ Donor Register to see what information they had they had however hit a dead end as they knew nothing about it. I would love to be able to donate alturistically however cannot seem to get into direct contact with anywhere. I live in the south-east of uk however my local hospital has no information on it.
Any help for getting past the first stage?
Cheers,
Luke
Hi Luke,
Great you found this blog as loads of information in it for you. What your best bet is go to your doctor. That is what I did as I hadn’t a clue. I told him I wanted to donate … help? how? where? what? … lol … and he was great. He looked it all up for me, even contacted the coordinator at the centre who then contacted me. So you could go to your doctor first who can lay the path for you. Or try this link, it has names of various centres, you may find the one nearest to you and contact them direct. http://www.organdonation.nhs.uk/ukt/about_transplants/transplant_units/transplant_units.jsp
Let us know how you get on with this Luke and don’t hesitate to post back or even contact me direct via the contact page of this forum if you need further info.
I find it very frustrating that people find it so hard to get information .. as you have found it hard. Not even getting past the first hurdle. This is the main reason I set up this blog to help people find out more.
All the best with this.
Di
Luke, I went to the HTA website, spoke to someone on the phone there, who gave me the details of who the transplant co-ordinators were in my area and their contact numbers. From there it was a matter of a couple of phone calls. they sent me some information and asked me to write a letter detailing my reasons for wanting to donate altruistically. As soon as they got that, I was invited to start the process. I have had my initial assessment and have the next one booked. I have been well informed and been given the option to leave it a while, carry on, or just decide as and when as I go through the assessment process. I am now due the 2nd lot of medical tests and waiting for the psychologist to contact me with an appointment. Good luck if you decide to go ahead with the process. Jen
Hi guys,
Well, got MRI scan on Wednesday morning, that’s my last physical test so hoping all goes well. Not particularly looking forward to it, i’m slightly claustrophobic but i’m sure i’ll be fine. After that I have my psychiatric assessment then i should be good to go!!! So excited, will keep you all posted.
Debs
Hi Debbie,
Please do not worry about the scan at all. I had a CT scan and I believe the MRI takes the same form. i.e. you will go in feet first and your head will not go under. Believe me noone could be more claustrophobic than myself, I cant watch TV if people are inside caves and I can’t close my bedroom curtains and I had cataracts removed 2 years ago – the injections were no problem, but as soon as they put the sheet over my face I had a panic attack and they had to stop the operation … lol ….. Scroll down and read about the CT scan I had, I am sure your MRI wont be much different. I asked about going under it and they assured me it stopped at chest level, which it did and I found nothing unpleasant about it at all. The results of the scan are excellent for the doctors to really see in detail your kidneys etc.
The psychiatrist evaluation is fine also. It may be then that you will donate before September at this rate. You will have to see the IA (Independant Assessor) and he should be able to submit your application to the HTA for approval there and then, online and then you should hear back within a week of that.
I am just so pleased for both of you and yes, a very exciting time indeed. I can’t wait to hear how the next steps pan out.
Thanks for the update ….
xxx DF xxx
Attention Debbie,
I just saw your post and would love to be in touch with you!! You and I are in the exact same situation! I am also donating to my father! Our surgery is scheduled for June 28th, a little more than one month away! I hope somehow you see this post and can email me. We can support one another!!
Anyone else out there that would like to share POSITIVE experiences or advice, please email me as well.
Lea Hanan
Hi guys,
Well, had the MRI and can positively say that for me it was the worst thing i’ve ever experienced in my life!!! The noise was unbearable and the feeling of just total claustrophobic panic was horrible but i stuck it out because there was no way i’d be able to go through it again. The nurse told me on the day that my pictures looked really clear, probably something to do with the 2 litres of pineapple juice i had to drink!!! Just waiting on getting an appointment through for psych assessment then that’s me all done. Lately for the first time ever my dad has been talking about what he will be able to do after the operation, it’s so amazing to hear him being positive. Can’t wait till it’s time to go ahead!!!
Lea, i’m in work at the minute and can’t log on to my e-mail but i’ll drop you a line as soon as i get home.
Take care guys and i’ll keep you all posted.
xxx
Oh Gosh Debbie sorry the MRI was ghastly. Not sure the difference between that and CT scan (I didn’t have an MRI) and from what you say I am glad I didn’t. So much for me saying it was nothing to get het up about! So sorry you had to go through that, but bravo for sticking it out!!
Must be wonderful to hear your dad be so positive.
Look forward to hearing how things progress. So near now.How long has your evaluation taken?
Di
Hello again.
My very first appointment with the transplant coordinator was 4th March this year. So in just over 2 months I’m nearing the end of the process, which is complete contrary to what I’d read online as I wad under the impression it would take over 6 months in most cases. It has been a very quick process and to be honest I’m quite glad of that, it must be so frustrating to have to wait
months on end from one appointment to the next.
Debbie
xx
Hi Debbie,
2-3 months … wow! That is quick. I wonder if that is because you are donating to someone you know opposed to a stranger, or is the evaluation etc identical for both. Non-directed donor evaluations do seem to take nearer a year than not.
Can I ask which hospital this is?
Di
xx
It’s been the Western Infirmary in Glasgow although I’ve had to undergo some of the tests at different hospitals in the Glasgow area. I could only assume the testing process for you and I would be identical although I’m not 100% sure. I reckon though because of the fact you are donating to a stranger they may give you a lot more time between assessments for you to make sure that this is what you really want to do and if not it gives you the option to change your mind.
Xx
I know someone else donating there and they seem impressed also with the way things are progressing.
Thanks for letting us know .. look forward to hearing updates.
Di
x
Hello Everyone,
I am donating my left kidney to my father on June 28th in Seattle Washington.
My process took about six weeks to get completely evaluated I did not need an MRI for this screening however i had one a year ago. I am someone that completely suffers from claustrophoebia (I do not go in elevators or airplanes, so you know I am talking serious issues!) Anyways, I got a medication which i call the “I don;t give a darn” medication and I had no problem handling what would normally be the end of me. So, I would like to suggest to anyone that has serious fears about surgery or testing procedures, ask for some medication before hand. I have already made it clear that I want some “I don;t give a darn” medication for the morning of surgery as I enter the hospital. i was told “No problem” and they told me to request it when i meet with the surgeon the week prior to surgery.
I welcome any comments to share your situation regarding kidney donation. After June 28th i am happy to support anyone by letting them know all the details and sharing any advice I may have at that time.
Lea Hanan
Hi Debbie…
How are things progressing? Have you finished with the evaluation tests yet? Is September still the month you are looking at for the donation?
Di
Hi guys,
Just a wee update. The last appointment i had was about 2 weeks ago. I went with my dad and we met our surgeons. It was just a general chat. I learned they will be removing my right kidney as I have 2 arteries that are too close together on my left one. All my results from the awful MRI were fine. Next step is the chat with the psychiatrist/counsellor which i’ve been advised is just a formality. They are looking to pencil us in for surgery in September. Will keep you all updated. Hope everyone is well and tests are progressing.
xx
Debbie,
Any news yet? How are things going. Do you have a date yet? Please keep in touch and let us know how things are.
Thanks
xx Di xx
Hi Di,
Sorry not been on in so long, bought my first house so it’s been all systems go!!! Well, great news, date for surgery is 29th September, so only 3 more weeks to go. I’m so excited and now my Dad is warming to the whole idea now too. How have you been? Recovering well?
D
xxx
Oh my goodness not long to go now. And it has all been happening for you with your house buying. How exciting! I have marked it on the calendar and my thoughts will certainly be with you both on the day, but hope to hear from you before then.
I am fighting fit, the only reminder of the operation being the scars which in time will fade. In fact the whole thing seems like a lifetime ago and one huge dream – but a lovely dream.
I am feeling so excited for you both.
Take care and keep in touch!
With love
xxx Di xxx
Hello all,
I wonder what each of you thought was or is the most worrying or stressful part of the donation process? I am considering donating but wonder about how well I may cope with it. I understand it can take months and months until donation and then up to three or four months for recovery.
Regards
Vicky
Hi everyone,
It’s been a while since i’ve been on here!!! Well, i’m pleased to report, the kidney transplant went ahead on 29th September and went amazing. My Dad is a new man, and whilst it’s been a slow process for me, i’m getting there and have been back at work for 4 weeks now.
Vicky, i’ll not beat around the bush with this. I donated my kidney to my Dad in September 2010. The first hospital appointment to get the ball rolling was 4th March 2010, so only 6 months for me to wait. I was off work for 4 months in total. Your post said you wondered about how well you’d cope. Well this is what I meant about not beating about the bush. For about a month after the op, I was totally utter crap. I haven’t even so much as broken a bone before so the pain/uncomfortableness hit me like a ton of bricks. Aside from that, I’ve never felt so low in all my life. I ended up in tears every other day for absolutely no reason, just so depressed. My doctor explained to me that post op depression can be quite common in transplant surgery and they liken it to post natal depression. A big build up to the main event then after it’s all over, a kind of empty feeling remains.
I need to make a point though, I don’t ever regret going ahead with my choice. I just under estimated my own coping mechanisms. It’s almost 21 weeks since my surgery and I’m still shattered and still a bit uncomfortable but that will fade with time and I just focus on the positive side – that i’ve got my old dad back!!! The most worrying part of the process was that I wouldn’t be a match and that people would think I was a let down. The most stressful part was basically all i’ve explained above, the after math lol!!!
I certainly don’t mean to put anyone off but I hope I can only help paint the full picture of what potentially could happen as nobody ever told me that I might get a bit low/depressed.
Anyway, if you need to ask me anything, just fire away.
, i’ll be happy to help.
Debbie xxx
Hi Debbie,
Did you have open surgery or keyhole? Four months sounds a long time to be off. My mother used to get depression after a major operation so I know what you went through. Poor you. I will certainly be prepared for the “aftermath”. Thank you for telling about yourself and lovely your Dad is doing well.
Regards
Vicky
Hi Vicky,
I opted for open surgery. I just couldn’t get my head round keyhole surgery. As it transpired, I made a good decision. The consultant came to see me the day after surgery and told me how beautiful my kidney was (which he actually wrote in my notes he he he) and that it was one of the largest kidneys he’d seen with an equally long artery attached so it may have been a struggle getting it out keyhole.
The average time off for recovery is 3-4 months but it’s not unknown for some people to be off work up to 6 months. All depends on the person.
Take care,
Debbie
xx
Hi Debbie,
Yes I have read 3 – 4 months recovery for open surgery and depending what your job is as to how soon you can go back. I am surprised he mentioned the large kidney after surgery. I would have thought the MRI and scans they do would have shown it was a large kidney. My mother had her liver replaced a year ago and got depression and felt totally without energy etc for ages afterwards. At times she found it hard to even get out of bed, it turned out her hormones had been upset which can be quite common with major surgery and once she sought treatment for that she recovered very quickly. It could be you need to see an endocrinologist regarding your hormones and get those checked out.
Diane did you get any depression afterwards? How long was your recovery. What has your experience been with all the people you have come across that have donated?
Vicky
Hi Debbie,
sorry was not around yesterday but people to see/places to go!
Debbie, gosh what a rough time you are having of it all. I am so sorry to hear that. You are the first person i have come across that has had this sort of complication in recovery. Of course I have not come across a huge number of people anyway, so I am sure you are not alone in this.
I think a huge difference between donating to someone you know, especially someone as close as your father, and in my case donating to an unknown is the emotional build up. You have many weeks of evaluations etc before donating and I know at the back of your and your Dad’s minds is the fact that at some stage it may be found you are not compatible or there is a problem and you cannot donate. The emotional stress must be huge. With me, the only stress I really got was playing the waiting game between appointments. I did not have anyone at the other end relying on me. I have always said to people donating to a stranger is far more straightforward than donating to a known person.
Having said that, it does sound that you were very unlucky with the depression. Unfortunately that is not something we have any control over. Our body goes through such a battering with a major operation. I agree with Vicky that it is more than likely hormone related and that is what causes the depression and the feeling shattered the whole time.
As for keyhole and open surgery, my surgeon told me that although I would have keyhole (my choice) IF once they were inside me they found something that would may keyhole difficult they would revert to open surgery and I had to sign the consent form consenting to both keyhole and open. I opted for keyhole because recovery was far quicker and less time in hospital.
But … I am sure your recovery will keep improving even if at a slow rate.
You have your Dad back and that is the best news you could have had and has made everything so worthwhile.
With love
Di
xxx
Hi Vicky,
No I did not get any depression afterwards, thank goodness. But having read what Debbie said, it sounds like you have no choice over the depression. Although I was told depression could happen I did not realise it was something that just happened, I thought it was a depression one could control, sort of like … “okay .. silly me, stop the tears, get on with things”. Which from what Debbie says it was not. I am so glad I did not get depression and I really feel for Debbie as I have had deep depression before lasting for many months due to my thyroid problem in the early days.
After the operation I actually felt really good, I felt on cloud 9 to be honest then life settled down very quickly and things got back to normal.
As for pain …. open surgery does cause more pain than keyhole as muscles etc have to be cut through. The only pain I got with keyhole was the bikini line incision area but the pain was not off the scale. It made me go “ouch” but that was all and then I only had the pain when using the very lower part of my abdomen, so when I tried to sit up in bed from the laying down position. So I propped myself up with pillows at night and then got no pain at all when getting out of bed. Walking I got some pain, but holding my lower abdomen stopped that. Of course it would have helped if I remembered to take my pain meds which I kept forgetting!! I had no pain at all inside me.
My experience with people who have donated has been very mixed. Some say they had no pain whatsoever. Others did get complications but they resolved themselves after several months or weeks. Someone had bad nerve pain for well over 2 months but that did eventually clear up.
Keep in touch both of you
With love
Di
xxx
Hi Di,
Nice to hear from you again, hope you’re well! Last year was really hectic which I don’t think helped matters. I moved out my family home into my first new home with my partner (30 miles away from where i’m from) and less than 3 weeks after that I was going under the knife. I wasn’t and still am not settled in my home as everything and everyone is all new to me. After the op my partner had to go back to work (he is in the police and works early/late/night shifts) so I was in alone myself for the majority of the time. I couldn’t drive for 6 weeks after surgery so I couldn’t get out and about to see my friends and as people have to get on with their own lives I didn’t have frequent visitors either.
Prior to even getting home, I had a rough time of it in hospital. The op was on the Wednesday, on the Thursday when I came round a bit more, I felt as though I’d been hit by a train. Unbeknown to me at the time, i’m allergic to morphine. My skin was crawling with it, my arms, legs and back were covered in bleeding cuts where i’d been clawing at myself. I was hallucinating, thought my bed was levitating and was hearing voices. I remember crying to a nurse asking her not to leave me as I was so scared!! Also, the gas they pumped into my abdomen travelled up and got trapped under my shoulder and started putting pressure on my right lung so I couldn’t breathe that well. Aside from all of this, as you’ll probably know, hospitals are not for R & R. I was exhausted. I couldn’t sleep with all the noise, people chatting, machines bleeping etc. My partner and his mum came up to see me in the afternoon a few days after the op and I had to ask them to leave. I was struggling to keep my eyes open. The best thing that happened to me was when the anaesthitist came to visit me. He gave me a spinal block while I was lying on my bed in the ward and all the pain dissolved. I wanted to marry the man!!! Thankfully after that, I started picking up a little and after a week they let me out.
When I was home, some days I just found myself sitting in my jammies all day, crying at absolutely nothing. A friend from work called me one day to see how I was and I ended up totally inconsolable crying down the phone. He made me go to the doctors who was really nice and offered to prescribe me anti-depressants but I didn’t want to go down that route. Stubborn old me decided to battle on. Bad move…. I became quite withdrawn, wouldn’t let my partner inside my head , we ended up having a big row and split up for a few weeks with him moving out. Thankfully we have resolved matters now and everything is back on track.
Basically, looking back, I think I just had too much time to think, was alone for far too much time and was just too ashamed to admit I needed help. Plus, my mum and Dad still don’t know about the depression side. I felt I couldn’t talk to them about it because I didn’t want to my dad to feel bad or guilty as if he was somehow to blame for me feeling this way.
It’s only just fairly recently I’ve felt my old self again. I think a lot of that has to do with being back at work and getting into a routine again.
Regarding the pain now, it’s more like twinges i’ll get, like a sudden throbbing pain that comes out of nowhere. It’s really odd!!! A big chunk if the area surrounding the scar is still numb and the consultant says I may never get the feeling back. Although areas are starting to have a bit of sensation in them again. To me it’s just more of a weird/uncomfortable feeling. I don’t like touching it, I can feel the pressure, but can’t actually feel it being touched like you would on any other part of your body. The latest thing with me is itching. Not on the surface though, it’s under my skin, like the tissue is all knitting back together. It’s driving me daft!!! Just slathering on the Bio-Oil hoping it will help in someway.
Sorry for rambling on but I find talking about it even now helps me to move on and look to the future. To be honest I got a bit upset recalling all those thoughts because it’s only now I’m beginning to realise just exactly what i’ve been through and how silly I was to not let anyone help me. But, not to worry, the future is bright! Getting married in 5 months and have my amazing dad to walk me down the aisle. That made all of the above worth it.
Speak soon,
Debbie
xxx
Hi Debbie,
Gosh I didn’t realise you had such a bad time as that. Poor you. I really feel for you. Sounds like an awful time right from beginning. It cannot have helped either moving home like that. Moving house in itself can be stressful and when moving away from family and friends. I am so glad you are beginning to feel your old self though.
Allergic to morphine, heck … but I suppose at least now you know for the future, but something you sure could have done without. Things just piled up on top of each other for you didnt they. But well done you battling through. The gas getting trapped in shoulder area is very common with most people. I got that too .. But I was not so unlucky as to have pressure from it on my lung .. oh boy, everything got chucked at you, how absolutely horrible.
I can understand why you did not tell your parents. Very tricky situation.
With my small keyhole incisions, I still feel numb around them, but of course each one is small so not that noticeable and I doubt would affect me if didnt clear up. I did get the itching also, and yes it drove me nuts. I have to say though I got more itching from the square white plaster things they put on, my skin did not like the adhesive and I also got three incisions infected as the internal stitching broke through each corners. Nothing major and I didn’t feel ill, just inconvenient and caused yet more itching, lol.
I really do hope you feel improvement each day and can soon say you feel perfectly fine.
Any time you want to talk you can either post here or use the contact form on this blog giving me your email and we can chat via email or could even phone you if you ever wanted.
But .. hey … 5 months time you are getting married … whoo hoo! What an absolutely fantistic time that will be … and made especially so as your wonderful Dad will be walking you down the aisle. I bet he wondered whether that would ever happen, and then you gave him the best gift of all and now he can.
Never ever forget how amazing you are Debbie. And please keep in touch.
Love Di
xxxxx
Thanks for everything, it’s amazing just having a place where I can come and talk about my feelings. I hope that I have in no way put anyone off donating, but in all the research I done before my surgery, I never read anything as frank as I have been so I hope it can let other people know what potentially may happen.
XxX
Debbie,
If people are thinking of donating it is only right they know the potential pitfalls. What happened to you may not be a common occurence, but it happened and so it does need reporting. I am glad you posted. I am glad you were able to open your heart and let out some of what had built up inside you. It is good to talk, and especially so to people who understand, who have been through the donation process.
At least if people are armed with information of potential complications then they make a much more informed decision and at least be prepared for what may happen afterwards.
Thank you for sharing with us. Keep in touch.
All the very best
With love
Di
xxxx
Hi Debbie,
Have been thinking of you and wondering how you are doing now. I hope things are getting better for you. Would love to hear from you.
With love
Di
xxxx
I am due to donate a kidney in 5 weeks time. I am having laparascopic surgery but I was also offered open. Should I change to open surgery or stay with the laparascopic? I hear different reports about both.
Yvonne
Hi Yvonne,
Gosh that is a tough question and really only you and your surgeon can really decide that. People I speak to who have had open say they are glad they did but then those that have had laparascopic say they are glad they had it done that way!
The only facts I have about both are as follows:
Operation time:
Laparascopic takes longer than open surgery and needs different skills than open surgery.
Scarring:
Laparascopic has around 4 smallish incisions the scarring of which should totally go. One larger incisions bikini line area. Not sure if that permanently leaves a scar or not.
Recovery:
Recovery is quicker for laparascopic as far less muscle damage etc than with open surgery. It can be 12 weeks for open surgery or longer whereas I know people who are around and about after 2 or 3 weeks when laparascopic surgery done. Although total recover is longer.
Complications:
I do not know the answer to that. So that is one thing for you to find out. Are the complications, both during and afterwards, and long term .. different for both methods?
Once you have those answers then you need maybe discuss with family and come to a decision. I would be interested to hear what you find out, especially about the complications regarding both methods.
Please Note that I am not medically trained in anyway and the above comments are purely from my own research etc.
All the best
Di
x
Hi Di,
Things have slowly been getting better. Spent 2 weeks at privately run treatment/convalescent centre (courtesy of my work) and they had me back into an exercise regime and stretching off all the muscles around the scar area, as i’m still quite tight. They’ve basically retrained my mind to remember that my body isn’t made of glass and i’m going to be ok.
Re Yvonnes question, keyhole certainly has a much quicker recovery time. I opted for open surgery as I couldn’t figure out how they’d get a kidney out a tiny wee cut!!! I donated 6 months ago tomorrow and still have numbness and discomfort to my lower right hip and side area. I dare say with keyhole this might not be so much of a problem as it’s smaller incisions instead of one big one.
XxX
Hi Debbie,
Lovely to hear back from you. Wow you have a great employer, they must really value you, that is great.
Sounds like you are slowly getting back to normal at long long last. Just hope the discomfort and numbness go in your hip area before too long. The numbness I can understand as I am still numb around my bikini line incicion but I do not have any discomfort. I think the keyhole incisions take less of a battering than the open incision does, so you have more healing and mending to do. What an awful time you had, I feel so sorry for the bad time you had. I do think you are the exception though, not that saying that will make you feel any better!! lol.
Please keep in touch and keep us posted as to how your recovery goes. Expect it has seemed a long 6 months.
Take care,
all the best now
Love Di
xxxxx
With keyhole although there are small incisions the main one for extracting the kidney is bikini line and mine is around 6 inches in length, so not too small.
Hello,
Thank you for response. I have decided to stick with keyhole for the following reasons:
1) From my research fewer complications after operation.
2) Shorter hospital stay
3) Shorter recovery, by far, at home
4) Don’t want to put my family through any more stress than this will already put them through.
I have waited four years to do this as wanted to wait until my daughter had grown up and left home and no longer dependant upon me. God forbid anything would happen to me, but if it did at least I will not be leaving my daughter with no mother at home to depend on. I so also want the operation method to be the safest all around option. Although keyhole seems to have some different complications to open, they seem overall to be less long term and less serious from the research I have done.
Debbie I sincerely hope you fully recover very soon. Sounds like you had quite a traumatic time. I believe with open surgery they have to cut through muscle which they do not in keyhole. That must make a big difference I would have thought to recovery and long term problems.
Thank you for comments. I appreciate it. Any other thoughts from anyone welcome.
Best wishes
Eve (Yvonne)
I am having open surgery in SW of England in about 5 weeks time because there is a problem with the vein structure which would make it difficult to use laparascopic method, so I had no choice in the matter. I think Yvonne you will beat me to it. But I will report back as to how the surgery went afterwards.
Good luck to everyone about to donate and well done to all those who have.
Giles
Hi,
I had open surgery for right kidney removal in the South West a few weeks ago, and it went very well.
Ken (Jen)
I think as with any method there will be those that have had a trouble free operation and those where there were complications, so each will praise the method they have. I know open surgery is far more painful and much longer to recouperate. For that reason I would not have chosen it, if I had a choice. Two friends of mine donated to relatives over the past couple years and they both had keyhole. They went home after two days. One was off pain meds after a few days and back to work after 3 weeks. The other friend didn’t take any pain meds at all and back to work after four weeks at a driving job. They both were very upbeat about it all as the recovery was so quick, not much pain and the small scars quickly went. I am not looking forward to the long recovery, I think psychologically will pull me down somewhat. I had a major operation about 10 years ago and the long recovery was so boring it got me down.
Giles, I am glad I had keyhole. Operation Thursday and home Saturday afternoon. Some pain to begin with, but mainly because I forgot to take my pain meds. But by week two things greatly improved and didn’t need any assistance with anything. Recovery was very quick indeed and emotionally etc I was on top of the world. Tired the first week, but after that I felt great. It would have driven me bonkers I think had I had open and had to spend ages in hospital and then ages at home before could get back to normal. People I have spoken to say that with the keyhole they preferred it because by week two psychologically they were way up at the top as the pain had disappeared so much by then. And it would have been length of time with pain and off work/normal duties that would have got people down.
Giles, I know where you are coming from but as long as you have a good network of support around you, which I know you have. I will come and visit also. Then I am sure the time will go quick and between us we can make sure you get out and about in the best way possible.
Take care now, and well done and good luck!!
Di
xxxxx
Ken,
Did you get the testical problem that a lot of men seem to get? What advice did they give you about that? Also the swelling and time getting it back to normal, what did they say about that when discussing potential complications?
Di, will be looking forward to your continued support. Have been a rock for me through this especially the bad times. Thank you!
Giles
Ken,
Yes would be interested to see what you were told about the problem Giles is aksing about? I can add it to the list of complications that will be going on the blog later.
Thank you both Ken and Giles for your input.
I think Ken going by the sound of the amount of pain you had and the fact that a few weeks later you still have pain, I would not want to go down that route, especially when with keyhole there is little pain and it does not last for weeks at all.
Giles I tend to agree with you, the least amount of discomfort, time off work and generally not being “normal” the better. Less time to mope around.
I have spoken to around 15 people who have had a mixture of open and keyhole and keyhole comes up trumps every time. That is excluding the few who had complications. With the ones that did have complications the open surgery caused the worst complications mainly depression and bad nerve pain and pain in general that lasted more than a month. In some cases several months.
I will let you know how my keyhole goes. Thank you everyone for input.
Eve